My life on a plate! A place where I get to waffle on about anything and everything, and hopefully raise some awareness about Cystic Fibrosis and organ donation on the way.

Tuesday, June 15, 2010

I am feeling increasingly frustrated following comments and remarks surrounding this story here so I had to blog about it.

The story is essentially an incredibly sad one; a young woman with end-stage CF got a double lung transplant, only sadly to pass away from pneumonia several months later. The thing that has wound me up is that everyone has hooked onto one thing; the lungs came from a smoker.

The use of a smokers lungs is an entirely seperate story, and granted, still one up for discussion. But the fact that these lungs previously belonged to a smoker is not what caused her to die. Pneumonia is what caused her death; sadly a complication that anyone undergoing a transplant can suffer. I myself had pneumonia in the month after my transplant which is what caused me to plummet to such dangerously ill levels that the team thought I would not last the night. My lungs did not come from a smoker.

According to her relatives, this lady would have refused lungs had she known that they came from a smoker. This is a completely personal preference. I personally would have accepted any lungs that the team declared good enough as I knew that it was my last shot and that people wait years and years without a single call. I trusted my team implicitly; surely have to when you get to this stage?

Don't get me wrong, I have nothing against her family; I cannot even imagine the turmoil and grief they are going through having fought so hard and come so far, only for the transplant not to work. But I am frustrated by the Media, who have taken two issues and looped them together, to create a cause and affect when that is simply not the case.

There are dozens of comments all over the internet along the lines of "how dare they [the hospital]" and "disgraceful! what poor care" (again the hospital) as well as "how disgusting, to be given a smokers lungs!" and these are really beginning to frustrate me.

Firstly, and most obviously to me, the person who donated those lungs was, in fact, a person. They have loved ones, they have a family who is still grieving for them and who in a moment of generosity agreed that their organs could be used to try to help others. This person gave the gift of life; I don't think "how disgusting" is really a very tasteful response.

All organs undergo extremely rigorous testing. The lungs would not have got through these tests if there was anything wrong with them which caused the team to doubt that they'd give the recipient an extremely good chance of survival. These criteria are so strict that many organs are deemed "non-viable" which is what results in a lot of the false alarms that people undergo. The medical team will have looked at the lungs on an independent basis; obviously the fact that the person was a smoker will have been taken into consideration but when you consider that 50% people waiting for lungs die before some come through, and that any potential donor having something like a chest infection could render the lungs non-viable, then what choice do medical teams have but to open all options and look at each set of lungs on a case by case basis?

The very sad fact is that there are not enough donors. People waiting for lungs cannot wait indefinitely; there are no machines to prolong life whilst the perfect pair of lungs are found. Medical teams do now have to use organs which are described as "sub-optimal" - that is because there is such a dire shortage that at least this offers a chance of survival.

The story is a tragically sad one, and my thoughts are with her family. They are also with the donors family, and with the teams around the country that every day have to make difficult decisions without a crystal ball to see how things will turn out. Transplants are not failproof, but they offer hope, and each and every one of us can raise awareness about them to increase the number of donors and therefore save more lives. Let's use this to do something positive; there are 10,000 people out there who desperately need us to.

PS- LLTGL Ambassador Victoria Tremlett has done a fabulous radio interview about this, which you can hear by clicking here and forwarding to 1hr 13 mins in. Just listen to the desperation in her voice; we need more organ donors. Please keep spreading the word. Thank you x

About Me

29 years old, small blonde and smiley. I love life, but was facing a death sentence due to end stage cystic fibrosis. Thanks to the generosity of a stranger I received a life-saving double lung transplant in January 2007, and am now a very proud mummy.
I am very much a people person and a rather girly girl, loving all things pink! I enjoy talking, laughing, utilising my love of talking in the form of public speaking and awareness raising, and inventing new words and then being unable to separate them from real ones in my head.